Tuesday, April 26, 2016

The Short List

     I'm just now starting to realize what a horrible thing my doctors did to me last month when I went to them for treatment. The brand-new, expensive anticonvulsant was making me totally wacko, so I went to the hospital to protect myself and my family from the bizarre thoughts going through my head.
     I was chastised for not making an appointment first, even though doing so would surely have delayed treatment and possibly led to me being transported in an ambulance or even worse, a helicopter. Then, I was basically handed over to the psychiatric staff, who decided my drug reaction was in reality a sudden onset of bipolar disorder.
     Instead of receiving any sedatives to relieve my extreme anxiety or calm my racing mind, I was kept awake and forced to instead talk my way through it in the hopes that I might finally have a seizure while hooked up to EEG wires.
     It took a couple of days for me to reach the point of exhaustion so that I finally did have one of my "events" because, as I have said on numerous occasions to my doctors, I do not usually have them when someone is watching me. It's something that happens when my mind wanders and drifts away on its own.
     So now, after this latest experience with modern medicine, I can add doctors to the list of people I will never again trust to treat me with any sense of respect or humanity.
     Pretty soon, the only ones left on my list of trustworthy souls will be animals, children and other freaks like myself. Thank God, there are plenty of us around to keep each other company.

Monday, April 25, 2016

Spring Fever

     Now that the weather is warm, I'm beginning to really miss having my driver's license. This is causing me to rethink my tendency to be totally honest with my doctors. "What good has it done for me?" I wondered to myself this morning as I got up to face another day of being dependent on other people to take me places.
     It's a question that goes around and around in my head more often these days. I feel betrayed by all of them except Dr. S, who had to move away to Wisconsin (too far to stalk him).
     Then, I remembered how the same doctors who expected me to surrender up to four days of freedom so they could videotape me with wires on my head readily dismissed my one recorded seizure as a mere "spell" before I left Walter Reed Medical Center last month.
     That's when I came up with an even better idea than lying to future physicians. I could use their own words against them and maybe shed myself of this epileptic label once and for all.
     After all these years of being on medication for seizures and even fretting over having a broken hippocampus, I can again embrace that original description my mother and I gave to my bizarre episodes when they began in the 1980s.
     If we called them spells then and a doctor at Walter Reed called it a spell last month, why not return to the past and redefine myself as NOT having epilepsy at all?
     The Virginia Department of Motor Vehicles cannot take someone's license away for having a "spell," now can they?
     I'm going to email my neurologist now and see what he says.
     It's boring having to stay here at the house all the time due to a strange type of seizure no one else seems to have or understand or even want to admit exists. Now that I'm not experiencing the ecstasy any longer, I'm ready to get out and about where things are actually happening in the world.
     Once I rid myself of this epilepsy label, I can officially break up with these cold-hearted neurologists once and for all. Someone would need to keep prescribing my Depakote sprinkles, however, as those pills sure do the trick for keeping my "spells" at bay.
     It shouldn't be a problem because Depakote is a very popular drug and doesn't need to advertise on daytime T.V. Like so many other anticonvulsants, it's a mood regulator.
     My "spells" certainly respond to it well, as does my chronic insomnia. I could more than likely get my primary care doc to prescribe it and do the necessary blood tests to make sure my liver isn't being destroyed.
     Then, I could get my driver's license back and not wait around until fall.
     I'll let you know what my neurologist says. Maybe he'll tell me I'm cured.

Wednesday, April 20, 2016

Some Powerful Mojo

     Last night, I rode with a new friend to hear one of the bravest men on the planet speak in Rockville. I was expecting a large crowd, like the ones I've made my way through to see one of my favorite authors, Jodi Picoult, but was surprised to find a more intimate setting.
     I started reading two of his books at once over the weekend. The first one made him famous, and now his new one really has my interests piqued.
     A few years back, I also read his little brother's book, but this brother is my favorite. His brother's book left a bad taste in my mouth and bothered me afterward, like a meal with raw garlic in it.
     At some point a couple of months ago, I communicated with this author, Johnn Elder Robison, via Twitter, I think. It's hard to remember the details, but it was one of those moments that gave me hope in the midst of what was definitely one of the strangest winters of my life.
     I'm about halfway through his first book, look me in the eye, and amazed at the adventures he is taking me on. Not realizing he was on the autism spectrum until the age of 40, Robison used his smarts to figure out how to fit in enough to survive the harsh judgments of others.
     Still, it bothered him. He told us last night that people with autism feel everything despite not showing it the way we expect. We feel it even more, and things bother us longer, too, he said.
     I could relate to that statement 100 percent.
     Until last night, I was having a hard time reading the early chapters of look me in the eye, waking up early in the morning with those bad memories from being a special ed teacher coming back to me. Now that I have seen the grown man and felt his strength in person, I can finish it with the anticipation of knowing the best is yet to come.
     The reason I consider Robison to be so brave goes beyond his list of successful endeavors in life, both before and after being diagnosed with Asperger's syndrome. Six years ago, he agreed to be a guinea pig for transcranial magnetic stimulation (TMS) so scientists could figure out how to help people with autism increase their ability to read social cues.
     My Flowers for Algernon comparison of what I am like when seizing or on various anticonvulsant meds pales in light of what he went through. Last night, he was adamant about referring to TMS as an experimental investigation rather than a treatment; the neuroscientists attempted to alter his emotional intelligence with magnetic stimulation in certain areas of his brain.
     The woman who introduced him at Ivymount School was careful to mention that the school promotes "evidence-based methods" of helping people with autism. Hearing that brought back a little hiccup of bad memories, too, but I know educators have to talk the talk in order to keep their jobs.
     The autism community has had some pretty nasty tricks played on it, as charlatans of the worst kind try to convince parents they can cure their children in various ways. Robison was there to share his experience rather than peddle TMS as a treatment.
     He did say that in the six years since his experimental sessions, it has become an accepted method for treating depression and will likely be used in the future to treat epilepsy. Yes, the E-word was mentioned at least three times during his talk last night, which filled me with hope and apprehension at the same time.
     What I someday consider fine-tuning my own brain in a way that could alter my emotional intelligence?
     To me, it sounds like TMS turned up the part of his brain that is already cranked at such a high volume in myself that I don't always fit in with my own kind. The prologue of his new book, Switched On, literally gave me goosebumps in describing an experience that sounds very much like my everyday relationship to music.
     After his first TMS session, as he was driving home, he played a favorite tune on his iPod that suddenly took him back in time 24 years. He was 50 years old at the time and had spent much of his youth traveling with rock bands who hired him for his technical engineering expertise to design exquisite sound systems and smoking guitars...not local yokels but big names like Black Sabbath and Kiss.
     Although Robison had heard the song on his car stereo system many, many times before, this was the first time he felt the music. In the book, he describes it as being like an out-of-body experience in which he could remember every last detail of the smoky nightclub in which he heard the song more than two decades earlier. Last night, he called it a musical hallucination.
     "I listened to music until dawn" he said. "It made me cry."
     Robison contacted his doctor and said, "That's some powerful mojo you got there!"
     He said, "After that moment, I heard music with greater intensity than I had in years. For the first time, I felt the emotions of the songs."
      To me, it was reminiscent of what happens when I listen to certain songs and feel as if I am in three different time periods at once. It also reminded me of the deja vu feeling that forces me to switch the radio in my car if I hear a song that starts to take me too far away, like I am about to have a seizure.
     That's part of the reason his new book fascinates me more and more as I turn the pages. It's almost as if his doctors experimented on the same part of his brain that is a little bit "off" in me.
     "A tsunami of emotion washed over me," he continued, eloquently describing that first night of being emotionally in tune with his favorite songs.
     I held back the tears when he told us this; my own tsunamis of emotions happen in the worst places possible, like when the congregation sings an old hymn, and I can feel myself back in the pews of my hometown church...a little girl with lemon drops on her breath.
     Sitting there on the third row at Ivymount, I used my self-taught emotional regulation to hold in the tsunami of tears inside me. Nobody likes a crybaby, the little girl reminded me.
     Robison said that first TMS session and the ones that followed sensitized him to emotions to the point that is was debilitating at times and changed his life in painful ways. He lost friends and divorced his wife as a result of the sudden increased ability to read the emotions of others.
     People who previously seemed to be laughing with him at work were also laughing at him, he realized.
     Robison's emotional wakening made him aware of the true value of being autistic as he became vulnerable to criticisms apparent in social cues he previously missed. "I lost the shield of autistic oblivion that protected me," he said.
     Prior to TMS, he was skeptical of people who react to faraway disasters that do not really affect their own lives in any way; it didn't mesh with his logical, Asperger's way of thinking. However, now he is more like me, bothered so much that he cannot watch the news without feeling pain for others.
     "Twenty years of therapy could never touch what 30 minutes of this did for me," he said. "We are on the cusp of being able to reach into the mind and change things that have never been able to be touched."
     After his diagnosis of Asperger's syndrome, Robison accepted the "God made you this way" of thinking, but now that has changed. TMS may not be a new treatment for people with autism, he said, but it is a metaphor for how medical technology can help all of us.
     Now, despite the disruption and pain caused by his sudden emotional awareness, Robison embraces his new identity as an advocate for the growing field of neurodiversity. "The whole point of this is learning to stand up for yourself," he said.
     Although he was already successful in several career fields prior to TMS, he volunteered for the study because all of his successes were solitary pursuits. "I wasn't a team player," he said. "I either believed I had failed or was told I had failed. Now, I'm doing things that are based on engaging large numbers of people."
     One of his new roles is that of teaching courses in neurodiversity at the College of William and Mary. "We're teaching every student that comes to William and Mary the value of neurodiversity," he said, comparing it to the civil rights movement of the 1960s.
     Referring to himself and a young man from the audience who had asked a question earlier, Robison said, "We could never qualify for admission at William and Mary, yet now I teach there." That statement was enough to convince me he realizes what a tough job he is taking on as an advocate for people whose brains are different from the norm.
      The final question was from someone asking if Robison considers the TMS experience to be worth it despite the painful journey and broken relationships. "Yes," he said, "This advocacy is the most important work of my life."
     Hearing those words come from his mouth and then shaking his hand was some awfully powerful mojo for me, still recovering from my own painful journey.